Friday, November 17, 2006

Guess What?

I'm going to the movies on Sunday!

This might seem unremarkable to you, but I haven't been to the movies in 5 years! I swear. The last movie I saw in the theater was the first Harry Potter movie, for Youngest Sister's 13th birthday.

The movies aren't usually on my list of priorities at all, to be honest. Very rarely do I mind waiting till something comes out on video (The LOTR trilogy was a big one!), or even on cable. In the pro/con tally, movies are heavily con.

There's the seating: the fact that I can't sit up long enough for a movie to begin with, added to uncomfortable & unforgiving chairs that invite flares. The chairs usually manage to hit every.single.tenderpoint in my body.


There's the noise level; my hearing, like my sight and smell is highly sensitive, and I don't understand why the movie has to be that loud in the first place. Then there's all the normal things I have to worry about when I go anywhere: smells, energy level, etc.

So, usually, not going to the movies is no big deal. But the beginning of this year I was looking at movie trailers (I don't know why I torture myself that way, but I do), and saw the a little penguin tap dancing. His little feet, the Stevie Wonder soundtrack? It was irresistible. And I was kind of pissed, b/c I knew my family would go and see it, and then they'd all have seen it before me. As usual.

And there isn't a one of 'em who can keep their mouth shut.

So, I was kind of sad that I wouldn't get to see it, and then I was watching a local show last night, The Phantom Gourmet, (which I love b/c they talk about food that people really eat, like Dunkin Donuts and Lays Potato chips), and they started talking about a place not too far away called Chunkies. I wasn't really paying attention, but when I looked up at the screen, I saw that they were sitting in big comfy chairs.

So I found their website online, and apparently, the chairs are chairs from limos. They recline, roll and have an armrest. Not too mention that they are grouped around tables!

This might work for me! I have sat in the car for longer than 2 hours, without too much of a flare afterwards. And, if I use my wheelchair as a foot rest, that should help with the hip, knee, leg pain. I've got the trusty IcyHot patches, as well as the ThermaCare for my neck. And the lidocaine patches for my back's worst points.

So I told my sister that I wanted to go, and coralled my brother and his family, my parents, and two other sisters into going too. It's a big HOOPLA! And this time, I get to play too.

(I refuse to worry about the following facts:
- Noise, smells, energy levels
- Thanksgiving is next Thursday and I will need to rest before/recuperate from that
- I have yet to finish Oldest Sister's scrapbook for her birthday on the 30th
- or a few other projects that have to be done by Christmas
- not to mention christmas shooping, cards, wrapping, etc.
- that this is probably the worst time for a hoopla! for me

Because... I am going! So there!)


Besides, I need to get out of the house, do something fun, or I might shoot someone.
(Did I mention my dad's on vacation? Or that my brother is not communicating well? Or that some other siblings are squabbling?)

So, I'm going to the movies!

Thursday, November 16, 2006

Poetry Thursday

And I cannot thing of a better poem than this one. Check out

Spellbound

by Emily Bronte:

The night is darkening round me,
The wild winds coldly blow;
But a tyrant spell has bound me
And I cannot, cannot go.

The giant trees are bending
Their bare boughs weighted with snow.
And the storm is fast descending,
And yet I cannot go.

Clouds beyond clouds above me,
Wastes beyond wastes below;
But nothing drear can move me;
I will not, cannot go.


-------------------------------
We've got no snow here yet, and it is, in fact in the high 50's (unheard of for a week before Thanksgiving). To me, this poem is not really about the weather. This poem is about me. (But then again, isn't everything?)


It's about me & this stupid sickness that I have to battle all the time:Could there be any better word than "tyrant" for this thing that keeps stealing & controlling my life?

My whole self is "weighted" down with something, and it doesn't really matter how bad things get, I'm stuck, spellbound. A "storm is fast descending," in the form of yet another family fight or, alternatively, a 6-year-old's birthday party? Don't think that changes things. Clouds are piling up; clouds of anger or fear or defeat? The spell doesn't care. Winds are whipping around me - people's voices filled with doubt, my own voice just still not understanding WHY - it doesn't matter.

I will not, cannot go.

It isn't a choice. There's nothing I can say to reverse the spell, nothing I have done that's been able to break it; and, perhaps most importantly right now, nothing I could have done to prevent it.

Will not, cannot: It's just that simple and just that complicated.

Wednesday, November 15, 2006

My best suggestions for online shopping

A few of my family members, who've never shopped online before, were looking for some pointers about how to get the most out of their Christmas shopping. I came up with a few tips, and figured I'd share them here too:

1) Never JUST shop. This means, don't just go to the store and buy something through them. Use a referral program. There are 2 types of referral programs: charity (yay!) and selfish (also, yay, but it's the season of GIVING, people!). I use two main referral programs, and have just signed up for a third. All three are easy to use, and have great benefits.

For charities, I use IGIVE:
Change Online Shopping for Good -
You sign up with your e-mail addy, and then pick a cause (I shop for the CFIDS association of America). And a percentage of your purchase - depending on the merchant - goes to the charity.

For Myself, I've always used MyPoints:
My Points
With MyPoints, they send you e-mails to earn points, and you earn a specific # of points per dollar at each store. And then your points add up and you can trade them in for gift certificates to retailers. And the vicious cycle continues.

And I just lately have heard about Jellyfish
Jellyfish
I've only just signed on, but Jellyfish says they give you a percentage of your buy (looks to be about average 3 or so %) right back to you. In $$, not points. I haven't used it yet, like I said, but I do have Xmas shopping to do, and will let you know how it goes.

So, we've got that, right? Don't just shop: make your shopping work for you! (This can sometimes be difficult if you're clicking through other sites ... listed in #2 or #3, but try to remember that you want to go through these sites.)

2) Always look for coupon codes. Seriously, if you are shopping online and don't look for coupon codes, then you shouldn't be shopping online. WantNot is a great site, Mir will post any deals she knows about, and then you know about them and ... UGh... then you want to buy something through that deal, even if you don't need it. The sites I regularly check for a specific retailer's deal (Say, my Old Navy bag is filled up to $200 and I think "Maybe I should see if there's any deals to be had here?") are Slickdeals, and - in the interest of earning stuff - I do searches through Blingo. You can win prizes & stuff. I have not won anything yet. But if you sign up, make sure you say my e-mail referred you; so that if you win, I win too, and then we'll have DOUBLE PRIZES!!!

3) Comparison shop. If there's a specific item you're looking for, type it into
Cnet, Froogle,Nexttag, Shopping or Shopzilla and you'll get all the competitors prices for that one item. If you need a specific price range, you can usually narrow that down too.

4) E-bay is not the only way. Ebay is great, but it can get expensive pretty fast (see: stupid vintage playpen that goes for $200;) You probably already know about Craigslist, but there's also Freecycle,(which isn't exactly barter, but close enough) & Freesharing. These are probably not your best bet this close to the holidays, but might be useful at other times of the year, when you're not in such a rush.

5) Don't forget Shipping & Handling: sometimes it's cheaper to browse online, and then get it at a store. Or use the website's (like CircuitCity's site) to reserve one at your local store before you go.

5b) Don't forget that Shipping takes time. If you want these things at your house by a certain date, you may have to pay more, and you still risk not having it in time if you don't order it soon enough. So get started, already.

How bout you guys... any tips to share?

Tuesday, November 14, 2006

Did you think I forgot you?

No such thing. I was waiting for Jeopardy, since I knew that was what I wanted to post about today. Specifically, the ridiculousness that is Celebrity Jeopardy.

I have a total love-hate relationship with Celebrity Jeopardy; LOVE that celebrities come on and play for charities; HATE that you can play the entire game with a 6th grader and both of you will get more answers correct than the celebrities.

Ok, I know we all know just how bad Celebrity Jeopardy is; SNL's take on it was amazingly funny, and sadly, not too far from the mark.


Sean Connery wasn't on the roster tonight, the contestants were Harry Shirer; Isaac Mizrahi, & Soledad Obrien (who happens to be the subject of a hilarious post by Dooce today, btw). I'm going to start off by saying that tonight's players screwed with my post. Because they mostly knew what they were doing, managed to get through a large portion of the board, and actually had a semi-difficult Final Jeopardy question (which caught two of them).

However, they are not the norm. And even in tonight's good showing, there were more than a few softball questions.

In the category new - someone recently married (newlywed)

Under 11 - in blackjack this card can be either 1 or 11 (Aces)

For Fly Overs: Heading North from South Dakota, you fly over this state before hitting Canada (how about North Dakota?)

And in Double Jeopardy, the supposedly more difficult round,
Under C - "nn" : A cozy little hotel, maybe for a honeymoon

But maybe they need the help: most often, the celebrities forget that if they get it right they get to choose the next question, waiting for Alex's prompting or who knows what. They also usually don't get very far in the boards, since we have to waste time with musical guests (who I happen to like in other circumstances, but in Jeopardy? When there's about 34 seconds for the question? No thanks.)

I get that it's for charity, and that you don't want to make the celebrities look stupid, but isn't asking them questions that are ridiculously easy really just saying: "We all know that you're too dumb to actually play this game with the real questions, so we'll give you the easy ones."


Again, tonight's questions were a bit harder than last week's: not entirely insulting their intelligence. Instead dumbing it down just enough for them to make it through the DJ round and rack up some good scores.

But then they went and ruined it by having a "stupid answers" category. As if they all weren't stupid answers.

Case in point:

Last week the question was something like this:

Celebrity relatives

Her grandmother, Louisa Drew starred in a play with John Wilkes Booth. (they said the name of the play, but I don't remember it)

Two of the celebrities wrote down NANCY DREW, for god's sake. Nancy Drew is A) not a real person; B) not a celebrity & again, a FICTIONAL CHARACTER!!; C) not likely to be related to a real live person, since she exists only in books.

The actual answer was Drew Barrymore.

It's nice of the celebrities to do things for charity, and it's nice that the show will pay the charities as much as they do (certainly larger payoffs than any of the contestants manage to get.)
But wouldn't it be better if you could show that the celebrities have brains?

I mean some of them must ~ right???

Alternatively, they should just let Will Ferrel host.

Monday, November 13, 2006

I'm reading Life: Our Century in Photographs and it gives me chills.

Some of the pictures are amazing, or graphic, or insane, but what bothers me is some of the things that are being said:

Regarding WWI: "Now that the United States was at war, Wilson deployed all of his formidable oratorical gifts to nurturing that 'single way of thinking.' He turned to the great task of persuading the American people of the worar's justice and necessity. HOolding aloft the torch of his idealism, he preached about the high purpose of the war to end all wars and the crusade "to make the world safe for democracy."

:shiver:

"The war, they decided, was a long shriek of collective insanity. Why, they asked,, had they ever sent The Boys to Over There? ... The Americans turned away from Europe, and from Wilson and his League. ... What they desired and what we needed... was return to normalcy. The real America. No urban mess. No radicalism. No foreigners of alien cosmopolitanism." p80

From the Vietnam Era:

"Over time each We (talking about the Women's Rights, Civil Rights, etc. movements) tended to harden, to accentuate the differences between one camp and the other. Radicals despised liberals, who they blamed for the Vietnam War, for insufficient commitment to equality and for affluence-soaked complacency overall. Each we tended over time to repel, or neglect, all those who stood outside its circle." p292

"In all these moral skirmishes, America represented just one theater in a worldwide war of fundamentalism with modernity - a war marked by religious terrorism, jihad or holy crusade, and fatwa.... This was a deadly but doomed effort. The writhings of orthodoxy, like the thrashings of a tree tortured by a storm, bore witness to the power at owork on it, not to the order it hoped to impose." p341



History repeating itself, and nobody noticing.

----------------------------------------------------------------

There are other disturbing things: Pictures of children, stacked by twos, in Iron Lungs in the 30's; the 1951 defense-duck & cover drills in a NY school; Anne Frank, age 5, playing in the sandbox with some friends; a Buddhist monk on fire; Kennedy caskets.

And plenty of beautiful things : a young Queen Elizabeth giving her famous wave; Gene Kelly in My Pal Joey; Dick Clark in a room made of album covers; ticker tape parades (Why don't we do that anymore: I think there should be more ticker tape parades!); Nadia upsidedown at th 76 Olympics; a bride in Beirut; Fred Astaire with his tapping shoes.

But while the 20th Century may have had many wonderful things in it, I can only hope we won't continue to repeat the horrors.

Sunday, November 12, 2006

(not) Tagged, but still It

Maya's Granny didn't tag me for this meme, but A) it looked like fun & B) I am very sore today, so I'm doing it anyways!


It's about movies, and I haven't been to the movies (in an actual theatre) in about 5 years. But I think I've got the answers covered anyways. Here goes:

1. Popcorn or candy?
Movie theater popcorn, snuck in candy. (What? Who does that? Not me!)

2. Name a movie you've been meaning to see forever
Citizen Kane. Seriously. Because everybody says it's the best & blah blah blah. But I already know what Rosebud is, so I kind of figure, what's the point?

3. You are given the power to recall one Oscar: Who loses theirs and to whom?
It's sad; I had to go and look at a list. So I'm going way back to 1959, taking away Charlton Heston's Best Actor statue (for Ben-Hur)& giving it to Cary Grant (who was in North by Northwest that year). I hate Ben-Hur. Ugh.


4. Steal one costume from a movie for your wardrobe. Which will it be?
Gotta be Audrey Hepburn: My Fair Lady. The Dresses; the
Hats; the Shiny Accessories.


5. Your favorite film franchise is...
The Lord of the Rings or Star Wars.

6. Invite five movie people over for dinner. Who are they? Why'd you invite them? What do you feed them?
Cary Grant. Because he could sit there in his suit and make me drool. Julia Roberts because she seems like she could be a normal person, if given the chance. William Powell & Myrna Loy, because they're elegant & classic, without even trying & because interesting things always seemed to happen wherever they went. And the girl who plays Hermione in the Harry Potter movies, Emma Watson, because I heard she's thinking about not doing the next one, and that is UNacceptable. They would have deserts: I'm a better baker than cook. And I wouldn't eat because I'd be too busy drooling, discussing, or otherwise entertaining.

7. What is the appropriate punishment for people who answer cell phones in the movie theater?
I think that we should be allowed to throw things at them. The chairs should have little ping pong balls or something and everyone else could keep throwing them until the loser got the hint. Also, the movie would pause, and then rewind to the point right before the phone started ringing.

8. Choose a female bodyguard: Ripley from Aliens. Mystique from X-Men. Sarah Connor from Terminator 2. The Bride from Kill Bill. Mace from Strange Days.
Well, Ripley's the best, all-around. But as the thing I usually need protecting from is the sun, I'd say Mystiques a better bet for me personally. "Hey, I need some shade here!"

9. What's the scariest thing you've ever seen in a movie?
Poltergeist, from beginning to end. It's cheezy now, but to a 6 year-old, watching it in the dark on a tiny little black and white TV, the thunderstorm scene, the raw meat scene, the bodies in the mud pool scene: All very very scary.

10. Your favorite genre (excluding comedy and drama) is?
I guess I love holiday movies next best: Elf, Love Actually, Christmas Vacation, Rudolph's Shiny New Year, Home for the Holidays, It's a Wonderful Life, Miracle on 34th St, etc...

11. You are given the power to greenlight movies at a major studio for one year. How do you wield this power?
Maya's Granny had a great answer: I choose some of my favorite books and, where they are still alive, have the authors do the screenplays. I'm not sure who would do the screenplays for Twain. Cast actors rather than stars.

To which I add: Stop pretending that stupid is funny. It's not. Stop writing/producing movies for teenagers: there are a lot of other people out here. Stop pretending that a 60 year old man is a suitable partner for a 22 year old girl: he's not.

12. Bonnie or Clyde?
Ick to both. But I like Jack Nicholson as an actor, so he wins.

13: Who are you tagging to answer this survey:
Anybody who wants to play...

Saturday, November 11, 2006

Saturday's already mostly over

& I never did get around to the Hunt. That's ok... I'll just go check out what all you've had to say today.

I was trying to make some progress on Oldest Sister's scrapbook, as her birthday is, oh, three weeks away. I'm getting there, but I'm not near done yet. I did get 9 pages done today though. Part of my problem is organization: I know I have quotes about reading, so then I have to dig out the quotation folders (yes, folders: 6 as of right now), and wouldn't you know it, reading is one of the subjects I haven't gotten around to putting in order yet. So then I have to comb through them all, looking for the little yellow dot that means it's about books (yes, I have both folders and a color coding system. Shut up.) & try to find one that fits the pictures. And of course, I get distracted. "Oh, yeah... I remember that book. That was a good book: Why don't I have a copy of that book? I should put it on my PBS list..." and on and on.

So, for today's post, how bout some really good quotes about books &/or reading?

Yeah, that's what I thought:


“A good book is like an unreachable itch. You just can’t leave it alone.” Laura Bush



“When we read a story, we inhabit it. The covers of the book are like a roof and four walls. What is to happen next will take place within the four walls of the story. And this is possible because the story’s voice makes everything its own.” John Berger

“Mother & I talked about books. It was our way of loving each other, and the reading of the same book was our principal shared experience. The worlds we inhabited were very different; here we had a common text. Even after I grew up & became aware that Mother did not discriminate between art and trash, and that I needed to, I remained, forever, willing to read any piece of garbage she wanted me to, just for the pleasure, the cocoa-in-bed, Christmas-Eve pleasure, of sharing it with her.” Jincy Willett



"One sure window into a person’s soul is his reading list.” Mary B.W. Tabor



“Well, books get to me personally. They remind me of the person I was and the people I knew at the time I read them, the places I visited, the dreams I had as I lay on the couch or in bed or on the beach & read them.” Sara Nelson



“When I was reading a book as a child I never saw or heard or smelled anything around me, not friends coming down the street in a cloud of summer dust, not the yells of my brothers from the backyard, not the aroma of my mother’s cooking from the kitchen down the hall. Reading was an ocean, a pond, a warm bath, and I slipped underwater. I had gills; I could breathe there, was a live in a book more than anyplace else I ever went.” Anna Quindlen


When I tell you that this is less than a third of the quotes I have, you'll see just how I managed to get distracted.

:)

Friday, November 10, 2006

Random much?

First off, let me just say this: I am totally not above using my blog for personal gain. So lemme ask you guys:

1) How's Blogger Beta? Everytime I publish a post, Blogger tells my how much better my blog could be on Beta. Anybody done the switch, have any opinions on how it's going? I'd love to hear it.

2) Now that a few people are actually reading my blog (I see you, lurkers. Welcome!), I'm wondering about commenting etiquette. I know Autumn talked about it a while back, but I'm still wondering. I try to reply both here and in e-mail back to the person. Because I know I don't always go back to the place where I've commented. So I'm hoping to get around to tracking everybody down.

3) Is your family crazy too? Because the Christmas craziness has already started here (Some people want to do gifts, others don't; Some want to pick names, others say they're buying for everybody), and I'm trying to NOT PLAY. You will not draw me in: I'm going to enjoy the entire Christmas season this year. So there.

4)Is there any world in which


this is not the cutest baby ever?


5) Why are side effects from drugs so annoying? Anybody got a rememdy for Dry Mouth? Because it seriously sucks. Also? Weight gain is r--i-diculous. Since starting the Lyrica ( & upping my steroids) I've gained 12 pounds. 12 pounds in a little over a month. This can not be allowed to continue.

6) How's your Friday going? It's getting dark so early here, it's screwing with my body clock. The non-sleeping body clock that just wonders why there is such a thing as day and night anyways: Night is just darker & with worse T.V.

7) Whatcha' readin lately? I've LOVED la Nora's Circle Trilogy, and her new In Death ( Mavis' Baby!!). I'm thinking of posting what I've been reading, what's in my TBR pile. I might get around to it this weekend. I might not.

I'm ready for a nap now people. How bout you?

Let's get this weekend started!

Thursday, November 09, 2006

Another Poetry Thursday

So far, I'm feeling pretty good about posting everyday: I don't feel like I have to dig too hard to have something to say, or that I'm too boring, or that it gets in the way of anything else I have to do. I'm planning accordingly, & spend a lot of thinking "oh, that'd be a good post." So, about 1/3 of the way through, I'm still feeling pretty confident. We shall see what we shall see.

----------------------------------------

Thanks to everybody who got in touch with me yesterday: the Dr. appointment was indeed a Hope-Raiser. I spent a lot of the appointment trying not to burst into tears, because my doctor just tries SO. HARD. I came away with a couple of negatives (my muscle tone is decreasing again; flu shot is hit or mix for me; my tender points are getting worse),a few next steps (increasing the Lyrica dosage; adding flax seed to my cereal in the mornings for its anti-inflammatory properties; continuing to wait and wait for those electro-microscopic biopsy results), and no frickin idea of what the hell most of it means. He's just the nicest guy, though, and I hate leaving his office feeling like we are failing each other, especially when I know that we are both doing our best.

---------------------------------

On to... Poetry Thursday!

Ordinary Life
Barbara Crooker

This was a day when nothing happened,
the children went off to school
without a murmur, remembering
their books, lunches, gloves.
All morning, the baby and I built block stacks
in the squares of light on the floor.
And lunch blended into naptime,
I cleaned out kitchen cupboards,
one of those jobs that never gets done,
then sat in a circle of sunlight
and drank ginger tea,
watched the birds at the feeder
jostle over lunch's little scraps.
A pheasant strutted from the hedgerow,
preened and flashed his jeweled head.
Now a chicken roasts in the pan,
and the children return,
the murmur of their stories dappling the air.
I peel carrots and potatoes without paring my thumb.
We listen together for your wheels on the drive.
Grace before bread.
And at the table, actual conversation,
no bickering or pokes.
And then, the drift into homework.
The baby goes to his cars, drives them
along the sofa's ridges and hills.
Leaning by the counter, we steal a long slow kiss,
tasting of coffee and cream.
The chicken's diminished to skin & skeleton,
the moon to a comma, a sliver of white,
but this has been a day of grace
in the dead of winter,
the hard cold knuckle of the year,
a day that unwrapped itself
like an unexpected gift,
and the stars turn on,
order themselves
into the winter night.

---------------------------

This poem speaks to the wanting, the longing in me. These are the kind of ordinary days I'd like to have, some day. My ordinary is extraordinary just by it's very nature: having to survive each moment, each day is difficult in ways you don't think to express. And one of those ways is the absence of ordinary.

But, even though I don't have the family I might wish for, I do have the family I've got. And my nephew and I spent many of our days building block towers, racing his cars back and forth across the kitchen floor. I know all about the "drift into homework," and "peel(ing) the potatoes and carrots without paring my thumb." We might not have pheasants in the yard, but there is a lot here that is recognizable.
And that closing, the lyrical language in this sentence:
The chicken's diminished to skin & skeleton/the moon to a comma/ a sliver of white/ but this has been a day of grace/ in the dead of winter/ the hard cold knuckle of the year/ a day that unwrapped itself/ like an unexpected gift"
That there is an intense beauty in even these smallest moments is one of this poem's most powerful meanings.


And I can only hope that our winter ~ yours and mine ~ will be full of these days of grace.

Wednesday, November 08, 2006

I will not gloat...

but I will do a little happy dance in my head. And if you think it's because the Democrats are finally getting the chance to step up to the plate, you're wrong. It's not just that: It's the fact that there will now be No.More.Political.Commercials!!!!! Yay!

Also, as a little side-note here, it's a week past Halloween, Thanksgiving is still two weeks out, and I think that's a little frickin early for Christmas commercials. Seriously.
---------------------


In other news, I've got a doctor's appointment this afternoon, and I don't feel like going. But I will. I just wanted in on the record: don't feel like it, doing it anyways. Actually, it's that kind of a day for me, all over. Got the Media player of shuffle, but I keep hitting next. Too impatient or itchy or something to make it through a whole song. And I keep thinking "Why is this song on here?" Since this is my computer, I know I'm the one who put it there.

It's just my mood, I guess.

Also? I don't like it when doctor's appointments are late in the day... I feel like I'm wasting the whole day waiting for it to be time to go. (And then, because I know my doctor, I'll be wasting my time sitting in the waiting room.) 45 minutes, then we can go. I'm just all moody b/c ... because these appointments so often fall into one of two categories: The Time-Waster or The Hope-Raiser. And I can't decide, just now, which is worse.

The Time-Waster is kind of the placeholder appointment: I go in and say how things haven't changed, and how I need to try something different, b/c these meds are definitely not the magic bullet they had been suggested to be. And they take blood and the doc talks about all we've tried, all the tests we've run, all the stuff we're still waiting to get back. And the whole purpose of this appointment is to wait some more. To have him say he's sorry, but they still don't know what the f@(* they are doing. And I feel badly for him & the nurse, who are trying so hard. And I feel badly for me, who is also trying very hard, & for my family who have to deal with this shit.

The Hope-Raiser is an all together differnt type of appointment, yet with shockingly similar results. I go in and say all I have to say and the doc says "Wow, look at these results: They show a definite XY deficiency! If we fix that, you'll definitely see marked improvement!" And I get all excited, but try not to get too excited. And I leave with the new treatment (whatever it may be: weekly shots? Fine! Drink this disgusting stuff 3 times a day? Fine! Come in for weekly infusions? Fine! Add yet another pill to your repertoire? Fine!) & the hope that this is the thing that does it for me. And when it doesn't, I am sad for him, I am sad for my family, I am sad for me. And everytime a new hope doesn't work out, I find that I am less able to hope the next time.

Which is really all my mood is about today: it's a gray & rainy day, and my mind's in a gray & rainy place: after the Lyrica not working the way it should, after the biopsy being just one more question mark instead of the period it was supposed to be. So, don't wanna go, but I will. Because one of these times, they're going to turn out to be right.

Tuesday, November 07, 2006

Election Day Post

In honor of election day (Have you voted yet, internet peoples? If not, go do so immediately. I'll wait.), I'm sending you to a recent post by the Smart Bitches. It's a discussion of the perfect political canidate, and what qualities would be required of him/her.


The fact that the list wound up creating a need for "virginal vampier politicians" is not just laugh out loud funny, but somehow sadly true.

Now, how does one go about becoming a member of the undead community?

Monday, November 06, 2006

Ah, the joys of digital cameras...

I've downloaded a ton of pictures today. You think I'm kidding, but in the past week alone, I've added over 300, from various people's digital cameras. I'm stuck in bed recooperating from yesterday's outing: Youngest Sister turns 18 on Thursday, I'm sure she and her friends will go crazy then (she's talking tatoo...), but the party yesterday was pretty low key - immediate family (& the people they are with) only.

It was loud only because there was a 6-year-old and an 8-year-old around. Ok... also the grown-ups were pretty loud; playing with the baby, trying to talk over each other, you know, all the usual stuff. (Although we never got around to a game: I only lasted a few hours & had to pack up & come home.) The scrapbook was a HUGE hit (yay!), and we all had a reasonably good time (Except for Youngest Nephew's new attitude, but I am absolutely not talking about that today, as I will get upset again).

Anyways, back to the pictures.

Don't you want to see Little Girl & Youngest Nephew in their Halloween costumes?

I thought so.


Here's Youngest Nephew arresting his great-grandmother. Her crimes are multiple, I'm sure.




And Little Girl's punkin costume spent almost the entire night covered up by a bib. She's very drooly. (That's my Mum behind her.)



And here's the both of them, during one of those rare moments that you could actually see the costume.


And, lastly, Youngest Sister, counting her candles, making sure they're all there.

I still don't believe it either: how is it possible for my youngest sister to be turning 18? Who sped up time? Was it you???

Sunday, November 05, 2006

Well, that didn't take long...

Days I have been NaBloPoMo- ing: 5

# of times I had to say to myself "Post something already!!!" today: a lot more than five

However, that's directly related to the number of MINUTES I slept last night: a lot less than five.
(Ahh, the irony of CFIDS-insomnia. Except irony is a stupid, stupid concept, people. S-T-U-P-I-D. Also, the wit of CFIDS-insomnia: Y'all are soo lucky to hear from me today, what with these high-quality witty remarks.)


Lucky you, I've prepared for just such an occasion --- I'm not new to this: the number of times I had to write (& then rewrite) a term paper at the beginning, (middle and end) of the semester, just in case of brain fog/hospitalization/any damn thing are too numerous to count --- So, I saved up some meme's to fill in.

Today's meme is short & sweet and I got it from Sadico Junction. I'm doing the answering today, though, even if I've been saving up the questions. So, I am, technically writing it today. I just figure there's less of a chance of me making no sense if I stick to specific things.

Here we go:

What is your favorite romantic movie?

This is hard: picking just one. I am not good at that. (Why did I think this would be easier, again?) Here's what I'll do for you, I'll keep it to two. My favorite oldie: An Affair to Remember and my favorite modern one: Love Actually. Love Actually was not a huge hit here, as it should have been, but it seems to be coming into it's own now: I often see it on people's favorite lists. As well it should be. It's a weird mishmash of stories, but they're all good. It's frickin funny, very sweet, and so different from most other movies. The other, An Affair to Remember gets all the credit it deserves (remember those scenes from Sleepless in Seattle?), but for me, it's all about Cary Grant. As the saying goes, I would listen to him read from the phonebook.

What are you currently looking forward to?
Wow, it's kind of sad that I couldn't readily think of anything. But I'm pretending that's the Fog. Today starts the crazy months for my family: Everybody but me, my niece and my nephews was born in the period from the first week of November to the first week of February. It goes like this Youngest Sister (18);Oldest Sister (30); Soon-to-be Sister-in-law (37); Only Brother (30); Mum (46); SisterM (21); Dad (58); SisterJ (24). Not to mention Thanksgiving & Christmas & all that hullabaloo. So, there's a lot to look forward too, a lot to budget time and energy for. Today, I'm most looking forward to seeing Youngest Sister open her birthday present: A scrapbook that I've been doing for months.

What are you scared of?
We've talked about this a bit before, but I'm scared of losing the people I love. I've lost some already, and the blows were hard to prevail against.

I'm also scared of not getting better, of being like this (or worse, dear God, the worse) forever.

What brings you joy?

My babies - Niece & Nephews. My crazy family. Books, books and more books. Wrapping presents. (Finishing presents!) Melted cheese & white chocolate (separately, my friends, separately).

And not breaking my 5-in-a-row-so-far streak! Especaillly since I'd rather have taken a nap. Oh... a nap. There's some joy right there!

Saturday, November 04, 2006

SPH: Windows





PSHunt


Grab the Scavenger Hunt code.

Photo Theme. Join the blogroll. Visit participants.



This week's Saturday Photo Hunt Theme is Windows. I could have done any number of things, considering my sister's room alone has 8 windows (it was converted from a porch, back before we were born). But I've always loved this picture, the silhoutte it makes. The picture's 6 years old now, as the baby in Youngest Sister's arms is none other than the now BigBrother, Youngest Nephew. Considering Youngest Sister turns 18 this week, and Youngest Nephew has lost the look of all but his last vestiges of little boy-ness, the sihoutte they'd make now would be dramatically different. But it's a picture that touches my heart just the same, because I can remember the gawky teenager that is now a beautiful young woman & her face when she held the round baby that has turned into a powerful young boy.


Friday, November 03, 2006

Hoagies...

I don't know if you've heard, but there's an award for amateur bloggers that's up and running over at Heather Anne's. (Are you reading Heather Anne's? Because I wasn't. And now I have to spend entire day's reading her archives.)

Anyways, Heather Anne has decided to host the Hoagie Awards. With trophies and everything!

So, I sent a couple of Nominees in (most of which are no surprise if you hang out here enough) ~


Hilarious-est Blog: The blog on my bloglines account that makes me laugh most consistently has got to be: Suburban Bliss Poor Pickle Boy!

Blogger who Should be President: For this, I go to my friendly "tribal elder," Maya's Granny over at
Maya's Granny.

Best Blog Written By a Heather (Sadly, I don't really know any) - edited to add: Now I do, but Heather Anne says you can't vote for her.

Cleverest Commenter: Chaos Theory, to be found at the entire blog is clever commenting! If only I had thought of that.


Friendliest Blog : I'm gonna go with Miss Zoot: and not just because she has free blogger templates, but because when I visit there, she makes me feel welcome.
-------------------------------------------------------------------------

So, on Tuesday, go on over and vote for your favorites. I have an idea that it's really just going to add new must-reads to my bloglines, but sacrifices must be made.

(I also must see if there isn't a smilie around in the "poor-me-southern-belle-faint" pose. That's probably asking too much, right?)

Thursday, November 02, 2006

Our First November Poetry Thursday (& NaBloPoMo Post #2)

and I've got a doozy for you today:

If
by Rudyard Kipling

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired of waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build 'em up with worn-out tools.

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on!"

If you can talk with crowds and keep your virtue
Or walk with Kings - nor lose the common touch,
If neither foes nor loving friends can hurt you ,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run,
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man, my son
!

---------------------------------

This is one of my absolute favorite poems. If is idealism to the extreme: it's like an idealist's checklist. "Follow these instructions," it says, "and your life will be right. Yours is the Earth and everything that's in it!" Doesn't that sound great? Everything is yours, if you can just do these things.

But here's the catch: all of these things are Very.Hard.To.Do.

There ain't an easy thing on this list. Which is why it's all just one big If.

When my high school English teacher first introduced my class to this poem, I wasn't really sure that I had 'gotten' it: it seemed to me that every single poem we'd learned in that class had a hidden meaning, and that my initial interpretation was entirely wrong (See: The road not taken). So I waited for the analysis of the poem that would tear apart my naive & illusioned response. But none came. It seeemd this poem was a poem that was exactly what it first seemed: a guide to living a grown-up & thoroughly good life.

10 years later, I'm still waiting for the chance to say that a lot of those lines apply to me. I can see all my worst weaknesses laid out there in that poem (If you can bear to hear the truth you've spoken/Twisted by knaves to make a trap for fools; If you can trust yourself when all men doubt you ), and wish that Kipling had given us more of a "how-to" & less of a just a list of requirements. But, there are some lines that I can claim, lines that I feel are my own, deep down, particularly this one: And so hold on when there is nothing in you/Except the Will which says to them: "Hold on!" Because, sometimes, that's really all there is.

Wednesday, November 01, 2006

October was a busy month for the blogosphere (as if there's a time when it isn't), so I had plenty of posts to choose from for this month's The Original Perfect Post Awards.

Here's a little roundup of what kept me busy, thinking, &/or laughing hysterically this past month:

Harley was being stalked by the movie Troy. For me, it's The Pelican Brief .

An intensely personal and moving call to action from Dirty Birdie, over at Dirty Laundry. And her colors are so pretty, too.


The Happiness Project, a recent addition to my addiction, had a terrific post about diffusing tantrums in kids; While Bonanza Jellybean posted about bad behaviors in adults.


Hidden Words and I both "celebrated" our Sickaversaries this month.


Molly Saves the Day had an unique perspective on the re-release of Disney's The Little Mermaid. And the Smart Bitches & their commenters gave their perspectives on reading romance novels at a young age. (Yeah, I started reading them early too: I was about 10. I wasn't exactly supposed to be reading them, but I read anything. During those first couple of years, I read one of my Top Ten favorite books, It (along with anything else by Stephen King). I also I also read parts of the encyclopedia, every book of the bible, and any other reading material in my house (Trust me, Cosmo makes no sense at all to an 11-yr-old.)


I couldn't stop laughing at Slate's assessment of that big faker, Harry Potter.
And Mama Pop quickly became a snarky must read after their post on the Gilmore Girls (even if they're a bit harsh on Aaron Sorkin.)

---
But my Perfect Post award goes to Balls & Walnuts, because I heartily second the notion that Boys Need Romance! Here's part of what he had to say:

"The best romances I have read answer questions which would bewilder the typical boy. Or man, for that matter. Foremost among these questions: What do women want? What do they need? What do they love about us? What do we do that drives them nuts?

Yes, IÂ’m making sweeping generalizations, but you know itÂ’s true. Guys, be they 13 or 33, donÂ’t know the answers to these questions. ThatÂ’s not the bad part, though. The bad part is, they donÂ’t even know they should be asking these questions."

The Original Perfect Post Awards

Congrats to Balls & Walnuts!

Tuesday, October 31, 2006

I'm juicin

Creative juicing, that is.

I'm amping up for NaBloPoMo.

A whole month of posts! All in a row!

Are we ready, people?

Are we excited?

Are we going to kick Blogger's ass, if it refuses to post pictures for us, like it's doing today?

Are we possibly going to throw up, trying to come up with a post for every.single.day?

If you answered yes to one or more of the questions, then check back tomorrow (and the day after that, and the day after that...) to see what's going on here at NTE.

Friday, October 27, 2006

SPH: Safe





PSHunt


Grab the Scavenger Hunt code.

Photo Theme. Join the blogroll. Visit participants.



Today's Saturday Photo Hunt theme is Safe...which is ironic.
Because after this post by the lovely Amalah, I'm feeling anything but about posting personal pictures.




So, here's who'll be guarding our house this week, keeping us safe...










Off to see who's keeping y'all safe this week...

Hello, all!

Well, my eye is recovering well, thank you for your concern &/or mockery. ;)

In other news, I'm going to have to figure out an escape plan. I am incredibly over-sensitive to smells, which in turn irritates both my asthma and the CFIDS, and yesterday the city decided to start repaving our street.

Um... Are you aware of just how badly tar smells, people?

Yeah. It's not good. So I'm trying to come up with an evacuation plan that seems plausible. They'll be back next week, which means I gotta get outta here. The only question is where to go:

Option #1 is up the street to visit with my grandmother. And, by 'visit,' I mean invade and take over her entire house for probably at least a week. The pluses to this plan are that there are people who live there (my grandmother, uncle, and youngest sister) who will help me (with eating and little things); that it's a short distance and Mum can come and go as she needs to without worrying that if I fall I would be stuck there until she came back; I'll be able to read, or watch TV or, pretty much whatever I would do here during the day; & they have Wi-Fi, so my pledge to post everyday in November will have a fighting chance at being true. The negatives (aside from the health setback that follows an evacuation, which I'm going to have no matter what option I take) include the fact that my grandmother isn't exactly well, and I (& Mum & Baby Girl) would be imposing (even if they said we aren't); that I'd be bunking on a couch/pull out bed; that there are three steps and a short walk into/out of her house, which I don't know if I am up for.

Option #2 is to bunk at my brother & soon-to-be-sister-in-law's empty condo, also down the street. It is also close, but has an elevator: no steps. It also has no TV or wifi or, really, anything other than an empty Refrigerator and a futon. Because they have moved their family back in with her mother, and nobody has bought the condo from them yet. I would still be close, but I would also be very alone, when Mum has to do what she has to do. (Which, hello, I am not going to focus on the very sad fact that, while I would love to be alone, I just am not physically up for it right now.)

I don't know if there's an option 3, really. I suppose I could go to a hotel, but how would that be different from the empty condo (except for that it would cost me $?) I could call my college-roommate/best friend, who would ... without a question... open her door to me, but she has a family & a job (not to mention a dog), and she lives... about an hour away. IDK, I can't think of other options right now. In the past, I've always chosen option #1, but I really don't know about those steps... hmm. Will be pondering this, I promise you.

ANY ways... before I wandered into my own little obsession, I was going to say that this:
is TOTALLY UNNECESSARY. Your cat does not need painted toenails. EVER.

Wednesday, October 25, 2006

Yesterday, I got deodorant in my eye

I kid you not.

File under: things that only happen to me.

So, I've explained before about my whole shower=coma thing... Showering takes so much energy, combined with the intense heat that my muscles require leaves me drained and zonked for a couple of hours.

So, yesterday, after my shower/coma, I started to get dressed again. This takes effort and energy, and I'm still running low on both. I have all the lotion and deodorant and clothes all set out beforehand, for easy assembling. I also have not put my glasses back on yet, because they are over.... there. And I am ... not.

I roll over, grab the deodorant. It's a gel kind, because the glands under my arms are often swollen and sensitive, and with this kind, I don't actually have to use much pressure. Usually, this is a very good thing. But yesterday, not so much.

Because I can't get the stupid cover off. And trying wears me out all over again, so by the time I finally do get the cover off, I have to lie down again.

Which I do. Then I click the little "give-me-more" clicky thing at the bottom, and deodorant comes flying out of the little hole and lands directly in my eyeball.

Holy Lord, the sting!

And, as it is stinging, I am not sure if I should scream or cry or laugh: I have DEODORANT in my EYEBALL! What the heck kind of crap is that?

So, I'm grabbing my eye and telling myself to blinkblinkblinkblinkblinkblink, because I know, from working with young children who love to get things in their eyeballs, that this is what you are supposed to do... Your eye's natural instinct is to rid itself of anything that doesn't belong there, hence tears will rush to wash it away. But telling a four-year-old with paint splashed in their eye to blink and making yourself blink while it feels like your eyeball may be on fire are two entirely different things.

I grab my bottle of water and use the little cap as an eye wash, letting the water drip all over the place, because I am still too damn tired to get up, but I have a stinging fire in my eye, so screw the sheets. My brain kicked in just enough to use the other eye to try and read the warnings on the back of the deodorant to see what they say about getting it in your eye.

Surprise, surprise, but there is no such eye warning on deodorant. Because even though the American public is too stupid not to know better than using a toaster in the bathtub, they are apparently smart enough to not get deodorant in their eyes.

Because this kind of shit only happens to me.

Today, my eye is raw looking and red. The kind of bloodshot that makes you not want to look at people ("Peanut, why won't you play with Auntie???") It's still a bit tender, but thankfully lacks the film that was freaking me out last night.

As I write this, all I can think are these two things: a) why am I telling the blogospher what a freak I am? & b)if somebody ever googles this entry, I am not sure if I would be afraid or glad.

So, blogosphere, what kind of crazy is happening in your world?

Tuesday, October 24, 2006

Since I am totally over feeling sorry for myself, let me just hit you with a couple of things that I think you should see.


First, I know everybody and their mother is already reading dooce, but seriously?
This entry? Way.Too.Funny.:

Normally I like to leave spaghetti noodles very long so that I can twirl them around my fork like people do in the movies. But lately I’ve been trying to make everything as appealing to Leta as possible, so this weekend I broke the entire box of noodles in half. That way she had at least a fighting chance of getting an entire noodle into her mouth without realizing just how slimy and oogly a cooked piece of pasta can be. It didn’t work, it never does, and instead of eating a single bite she spent the entire meal wiping pasta sauce off each noodle. With a wet wipe. Until every noodle in her bowl was clean. As if preparing her personal space for the triumphant return of the Lord.

Because I can totally see Leta sitting there, wiping off each noodle till it sparkles.

-----
Miss Zoot has a bit in her post about my new 'favoritest' show: Studio 60 on the Sunset Strip. People? Why are you not watching this show??? It is excellent: soaked in Sorkin-y goodness. Fast, witty dialogue; characters who care; sly, intelligent humor. If they cancel this show, I will be very upset with you all.

------
And Gina had a line that pretty much sums up how I feel about the people upstairs:

And really, if you are going to spend your whole life wishing you were somewhere else, do the rest of us a favor and go already.

Now if only I could find a way to get them to do it...

Happy Tuesday all...

Friday, October 20, 2006

Sick-a-versary

This post is for me: it's all the wallowing I am allowing myself for this, my 12-year Sick-a-versary. This year, I’ve decided that the only wallowing I can allow is in writing.

So I’ve gone back over all the stuff I’ve written, or read, about being sick over the past 12 years. It’s a lot of stuff, I’ll tell you. Mounds. So, in “honor” of my 12th sickaversary, I’m going to give you some snippets, little glimpses into my life, and what it’s been like during this long, hard, battle. Mostly so people won’t be worried about me, I’ll warn you that these aren’t always easy to read (even for me), and that I don’t necessarily still feel the same way about certain things as I did when I wrote them. But they were how I was feeling at that particular moment in time, and some of these things I haven’t even shared with those closest to me. (Gotta love the anonymity of the blogosphere for spilling-your-guts purposes.)

--------------------------------------------------
Today is my 12th sick-aversary

It is 12 years, exactly, since I was well.

On the 20th of October, 1994, I was decorating the homecoming float with my friends, then I taught my dance class (5 yr-olds) and got them ready for a halloween party.

On the 21st, I was so sick that, when I fell out of bed, I could neither call for help or get up on my own. I couldn't even roll over.

Over the course of 12 years, I have had a lot to say on this subject, and so have many others. So here it is:

I can’t express my pain in a way that seems reasonable. If I say it is screaming, that doesn’t seem loud enough. If I say it is nagging, that doesn’t seem overwhelming enough. If I say it is constant, that makes it seem as if I could get used to it (and, sadly, at some point you do). Ache isn’t a big enough word; pain isn’t easily definable. I can’t explain the depth of this pain: how it swallows everything else. Everything I know about myself, everything I know about the world, and everything I think to be true. It becomes all I know, all I can feel, all I can ever remember feeling.” October 2004

“People talk about their chronic pain as if ratting on the other partner in an unhappy, toxic marriage. They fall out with their pain, they have screaming fights with it, they make up again. Or they try to run away with some attractive little analgesic. But pain has their cell-phone number and won’t let them escape. Living with chronic pain can be a grinding form of intimacy.” (Marni Jackson, Pain: the 5th Vital Sign, 2002, p 95)



“My body has become this traitor, this thing I can’t even recognize. I hate it… and it is me… what does that say? How does a person live in a body that they don’t understand and hate so much?” 10-3-04

“My tests were all negative; nothing could explain my illness except chronic fatigue syndrome. I called my parents. “I have good news and I have bad news,” I said. “And it’s the same news.” (Anne Ursu: You’ve Never been tired like this: Glamour Magazine, June 2005)


“I have had people – close to me and close enough – tell me that I am lazy, weak, depressed, not trying. I have been told more than once to “just start moving” or to “just keep it up till I feel better.” On my worst emotional days, I feel the guilt of being unable to do so, the fear that I am not really trying, the shame that I just keep failing.” 1/14/05

“There’s so much suffering, and so much of it is emotional and mental. You feel incredible guilt, you feel like you are the only one who has this. It’s the opposite of hysteria, which is supposedly caused by all the openness, all the media attention that makes everybody believe they have these things. This is the opposite, where you believe you came up with this on your own, you invented it. These drugs should be working, so you’re unresponsive. The alternative medicine should be working, so you’re not thinking positively enough or working hard enough.” (Paula Kamen, Head Case, salon.com, 10/05)


“I have thought about dying more than once – in a nonchalant sort of way that is terrifying. “If that bus hits me, I won’t really mind. At least it wouldn’t be this.” At my worst, my most painful, I prayed that a bus would drive through my room: jump the curb, onto the sidewalk, through the yard, crash straight through the wall into my bed. No one else is hurt, and I am hurt no more.” Sept 27, 2004

It was the easy way out. No more trying to keep pace with others. No more pretending everything is ok. No more mind over matter. No more irrational fears. Better yet, no more rational ones. … After thinking through all my options for the past few weeks, I had come to the conclusion that I would not take the easy way out. … Dying sound fine, just for a little while at least, to get some relief – but suicide was too drastic. After all, the desire for self-destruction and the desire of wanting pain to end can be two different things.” (Paula Kamen, All in My Head; p257-260)



“In my fervor to not make my illness the center of everyone’s lives, it has erased it from them completely. Oh, they know that I am sore. They know that I am tired. But they don’t know what it is like to be me… what every day is like. What every failure is like. What every minute of waiting does to a person. Oh, every now and then they will ask, they will say “so, what’s new?” But really, all they want to know is that I am still trying, that I haven’t given up. That they won’t have to deal with me, like this, forever. They ask only because they are supposed to: and this is partly my fault, for having no progress to report is both daunting and discouraging and there are only so many times you want to give the same bad news.” February 2006

“I know what it is to be ill in the bosom of your family… Unless you want to behave like an abominable egotist, you have to avoid giving expression to your pain so as not to upset those around you. ….Our pain is always new to us, but becomes quite familiar to those around us. It soon wears out its welcome, even for those who love us the most. Compassion loses its edge.” (P76, Daudet, In the Land of Pain)

“Anybody who’s ever really been sick knows that the tolerance level for illness is low. Once the get-well roses begin to wilt, everything changes. Compassion and caretaking turn into burdens and vulnerability becomes weakness.” (Writing the Wrongs of Identity, Meri Nana-Ama Danquah; p176)



“I’m sick of reading about dying, injured, paralyzed, horribly ill people and hearing “And s/he never complained. Not once.” Or “she died with a smile on her face.” What kind of crap is this? What kind of people are these people?
How can anyone (Not just a sick person, but any person), live a life and not complain?

Are there actually people who never feel tired, or sad, or just plain, done? I don’t know those people. And I don’t think I want to know them. And I damn sure ain’t one of them.
Being me is HARD: Living is HARD. Living with a chronic illness that no one understands, no one cares enough about to research; no one wonders what it’s like to live like this, to be like this, to have all this pain all the time, this brain that doesn’t function, this body that argues with you over every little thing. How do you never have a complaint?
Real life is messy. It’s painful and complicated and confusing and frustrating and scary (and joyous and wonderful and sometimes almost perfect) and to keep all of that inside of you would only make it more so.
If I couldn’t write.
If Mom didn’t listen to me vent.
If Shannon wasn’t still an ear I can pour my soul directly into.
If all of these outlets were missing, I would be missing. I can promise you that.
If I had tried to make it through the past 10 years without complaining, all alone with my worries and concerns and upsets, then I wouldn’t have made it.
And there should be no need to keep it all to myself.
People who are sick shouldn’t feel compelled to think they’ve got to hide all their weak spots just because they’re sick.”
1/7/05

“Today, when alternative therapies are available in every mall in the country, the ill person is blamed not only for getting ill, but if the therapies fail, he is also blamed for not getting better (“he gave up too soon,” “he didn’t want to get well”).” (Susan Greehalgh, Under the Medical Gaze; 2001; p49)


“What kind of person wishes they were in a coma? Wakes up from a dream that they were in a coma and is actively disappointed? What does that say about where I am, who I am? I’ll tell you what I think: I think about how a coma, in the way TV or books portrays it, is a chance for your body to recuperate. A chance for your body to go back on its reserves and heal whatever is bothering it. To revive from something that you can’t deal with in any other way. So to dream about that chance – to sleep away all the time it’s taking for me to heal, all these false starts and relapses and horribly long periods of nothingness, of waiting. Well, that seems reasonable to me. Seems right. I wish that I could just sleep through it all, that one day, I’d just wake up, refreshed & feeling alive. Envying a coma… what kind of position is that to be in?” 1999

“The prisoner imagines freedom to be more wonderful than it is. The patient imagines good health to be a source of ineffable pleasure – which it isn’t. All that we lack is a sense of the divine.” (Daudet, In the land of Pain , p44)



“I am sick of playing guinea pig, but really, what other choices do I have? To ‘live’ like this forever? I don’t think so. But the more things I try that don’t work, the harder it is to believe that there is something out there that does… that will.”

“Until then, I’m tired. Exhausted. No reserves, no power left: plug me back in/charge my batteries tired. Not just physically, but mentally too. Tired of having to make do. Tired of waiting around. Tired of trying my hardest, putting all my effort into my every day and having no one see it. Tired of seeing the same four walls; hearing the same six songs; talking to the same five people. I’m tired of feeling sorry for myself. Tired of searching for answers that seem impossibly hidden, maybe even lost forever.”
8-15-04

“People who think dying is the worst thing, don’t know a thing about life.” Sue Kidd, Secret Life of Bees, p2)


I just want it all to stop. I just want to be NORMAL. Just want to be able to live and feel and think about ordinary things. To not worry about tallying up today’s allotment of pain, or tomorrow’s allotment of pain pills. Or tallying today’s energy while worrying about the lack of stores left for tomorrow. It isn’t fair, and I hate it. I hate sitting here typing all this, feeling like the biggest whiner. Like someone who just can’t “get over it” already. But I’m not over it. I don’t know how to be over it. I don’t know how to get past this, if my body won’t let me.
I’m tired of having to decide. What’s right and what’s wrong. For myself, for my body. Which doctor to listen to, which ones to ignore. Which pills to try, which ones to stop taking. Which therapies are worth the time and effort and energy, and which ones aren’t. I just don’t know. And I don’t want to have to decide anymore.
I’m tired of having to suck it up. Of having to not cry. Of pretending that I am happy with my life the way it has turned out to be. Of not having the control I should have over my life. I’m tired of having to make nice to people just because I have no other place to go. I’m tired of biting my tongue about important things because I can’t make anybody mad, because I need them to help me. I’m just tired of it all. I’m so damn frustrated and angry and sick to death of the whole thing. It makes me want to cry. It makes me want to throw up. It makes me want to break something into a hundred tiny little pieces.”
October 3, 2004

“When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” (Elizabeth Berg, We are all Welcome Here, p97, 2006)


------- & -------
That's it: The end of Wallow-Fest 2006.

We now return to our regularly scheduled programming.

Thursday, October 19, 2006

Poetry Thursday

It's Thursday again, and I've decided that means poetry. Mostly because I've been reading it again, and I forgot just how good it can be. Just how much it can resonate with your soul.

So here's today's poem:

In Bed with a Book

Mona Van Duyn

In police procedurals they are dying all over town,
the life ripped out of them, by gun, bumper, knife,
hammer, dope, etcetera, and no clues at all.
All through the book the calls come in: body found
in bed, car, street, lake, park, garage, library,
and someone goes out to look and write it down.
Death begins life’s whole routine to-do
in these stories of our fellow citizens.

Nobody saw it happen, or everyone saw,
but can’t remember the car. What difference does it make
when the child will never fall in love, the girl will never
have a child, the man will never see a grandchild, the old maid
will never have another cup of hot cocoa at bedtime?
Like life, the dead are dead, their consciousness,
as dear to them as mine to me, snuffed out.
What has mind to do with this, when the earth is bereaved?

I lie, with my dear ones, holding a fictive umbrella,
While around us falls the real and acid rain.
The handle grows heavier and heavier in my hand.
Unlike life, tomorrow night under the bedlamp
by a quick link of thought someone will find out why,
and the policemen and their wives and I will feel better.
But all that’s toward the end of the book. Meantime, tonight,
without a clue I enter sleep’s little rehearsal.

-----------------------------------------------------

Again, for me, this poem boiled down to one line:
What difference does it make
when the child will never fall in love, the girl will never
have a child, the man will never see a grandchild, the old maid
will never have another cup of hot cocoa at bedtime?


Is there anything you can say to that? It is an ultimate truth.

So that's what I've got for you lucky people today, an ultimate truth, in poem form.

Enjoy.

Monday, October 16, 2006

Things I have to say today

  • in random, bullet style:


    • Chicken Fingers should not be spicy.


    • Going to the dentist is scary, I don't care how old you are. (Even if the dentist is very sweet, probably younger than me & definitely better than last pervy guy dentist.)


    • Dear Channel 7 - Please stop with the alliteration. ("College Co-ed Caught and Kidnapped" and "Coffee Caper: a Horrific Holdup" is a bit much, don't you think??)


    • Younger sisters need to stop traveling the world, buying new apartments, & going on blind dates (with pickle phobic strangers). I am feeling very left behind (except for the whole pickle thing). (And also, I should so stop beating up on myself for feeling totally jealous...ugh).


    • Any commercial where people get hurt (Have you seen the new Corelle/model spot? LOL) will make my mother laugh. And I know it as soon as I see it... is there something wrong with us?


    • I need to stop putting everything on the "when I get (even the tiniest bit) better" list. A lot of things I can't do until then, but I'm going to weed through it, find out what I can do now. There's gotta be some things...


    • If the 1 against 100 questions don't get any harder, I might just sign up to play. Because I could probably get over all my "I hate being on cameras because I am fat and semi-broken" hang-ups if it meant I could win $1,00,000,000. Those questions are easy enough for my nephew (age 6). Are they going to get harder?



    • I am too tired for family drama. Grown-ups need to stop acting like babies; sisters need to stop squabbling; everybody just needs to plain get in gear, here. I have spoken, so shall it be. (hahahahaha--- yeah right!)


    • Must actually mail letters I have already written, instead of just letting them sit there on my desk.


    I think that's it, but who really knows?

    I'm off for double Jeopardy, which better be easy.

Saturday, October 14, 2006

Saturday Photo Hunt: Lost





PSHunt


Grab the Scavenger Hunt code.

Photo Theme. Join the blogroll. Visit participants.



Quick and cute for you today:

Here's BabyGirl, 4.5 months, searching diligently for the keys she lost



and... just so you won't worry all week about it, here's the found



Hope everybody has just that kind of luck all week long!

Thursday, October 12, 2006

A poem for a Thursday

I'm totally frustrated with my family members right now (you know, the ones who say that we're going to be watching the baby and then never show up and never call???), so all my writing is rant rant ranty rant.

Instead of subjecting you all to that, I thought I'd post one of the poems I'm in love with from this amazing book.

(I'm pretty sure I can post it, so long as I include the author's name... the blogosphere is full of all these tricky situations, ain't it just?)


So, anyways, here's a poem for you, on this Thursday:


It Is Raining on the House of Anne Frank


by Linda Pastan



It is raining on the house
of Anne Frank
and on the tourists
herded together under the shadow
of their umbrellas,
on the perfectly silent
tourists who would rather be
somewhere else
but who wait here on stairs
so steep they must risee
to some occasion
high in the empty loft,
in the quaint toilet,
in the skeleton
of a kitchen
or on the map -
each of its arrows
a barb of wire -
with all the dates, the expulsions,
the forbidding shapes
of continents.
And across Masterdam it is raining
on the Van Gogh Museum
where we will hurry next
to see how someone else
could find the pure
center of light
within the dark circle
of his demons.

------------------------------

How amazing is that? For me, it was all about "on stairs /so steep they must rise/ to some occasion." It's a beautiful poem. Just amazing.

And the book , Good Poems for Hard Times by Garrison Keillor, is packed with little gems. I borrowed my copy from the library, got about 15 pages (and 8 sticky notes) into it before I put in a request for it over at Paperback Swap.

So, that's what's what for today. Will go read some more, refrain from writing nasty e-mails to careless loved-ones, and listen to the rain here in Massachusetts.

How was your day?

Wednesday, October 11, 2006

I have things to say about tonight's episode of Lost,
this discussion over at the Smart Bitches, and a whole bunch more. But for right now, let me just say:

Did anyone else see The Colbert Report tonight? With "George L."? Could it have been funnier? George trying to look sad when he didn't win, Stephen pretending not to laugh when he says "You really captured the look/feel of those movies?" or "How many times have you seen those movies? A couple?" (Those are not the exact quotes, I am sure...but still you get how funny they were.) Tonight's Colbert Report (which will be replayed 3x tomorrow on Comedy Central, so you can catch it if you missed it) was AWESOME. I bow to his highness.

:)

Just random.

Today, I wanted to buy a lottery ticket, but never left the house in order to do so. I have this very weird ability to pick the daily numbers three minutes or so before the numbers are called. :shrug: I don't get it, and it doesn't work at any other time ~ say, like when you might actually be able to BUY a ticket & win some money ~ but it's still interesting.

Today, I reread a Nora Roberts (one of my favorite authors) book for probably the sixth time. It isn't even my favorite of her books, which shows you how many times I have read her books. I got the newest, the second book in the Circle Trilogy (awesome: about magic and power, love and war; has vampires and vampire slayers, time travelers, witches, sorcerers and goddesses. Pick it up now!), on Monday, and it took me less than 2 hours to read the whole thing. Now I am upset that I have to wait a couple weeks for the finale.


Today, I ate all sorts of things I shouldn't have eaten. It was one of those things that you know is stupid, even as you are doing it. I don't really know why I do things sometimes. There was something about having the house all to myself for two days that made it seem like the thing to do. It's a little bit crazy, and I know that, but I still did it anyways.

Now I am off to watch the mindmaze that is Lost. Who knows what the heck will happen then.

Monday, October 09, 2006

Do you know how hard it is to come up with a good title?

Pretty dang hard.

This whole "long weekend thing" is screwing with my schedule: when you're home all the time, the days of the week are only recognizable by the schedules of the others in your home (and the shows on tv). My sister didn't go to work today; BabyGirl didn't show up. Wait...isn't it Monday??? I know I watched Brothers & Sisters last night, so it should be Monday.

Don't let them fool you: it is Monday. It's Monday in disguise.

Anyways, I got all my papers organized this weekend.
(I should keep a tally of how long that actually lasts: 2 days and counting.)

I lost an entire day yesterday trying to make a photobook on Shutterfly.
(Seriously, I am so anal about things like that... it would have been fine if I could just let things be!!)

On the plus side, I saw X-Men 3, which was very, very good. I was impressed, because I think all three of the movies have been utterly entertaining.
(My favorite shot was the one where Juggernaut threw Wolverine through the ceiling of one room and he came down through the ceiling in another... spectacular.)

Today, I'm hoping to get some scrapbooking done: I've done 3 out of 5 of my siblings, but these last two are the hardest, because their moms are not my mom, so I don't have as much stuff to add. They are very picture heavy.
(And need to be finished in a month... so I better pick up the pace.)

Also, I'm trying not to obsess about BigBrother, Sister-in-law, Punkin and Peanut (Youngest Nephew, only Niece) moving back down to where her parents live. It's about 45 minutes away, so Punkin had to switch schools. But BigBrother and Sister-in-law will still be working up here, so we'll still be watching Peanut during the day. Basically, these two siblings will be being raised independently of one another, and I don't think it's a good idea. Also, with longer commutes, BigBrother and S-I-L will be getting home later, seeing less of both their kids. All around, I think it is a bad idea, but they've made their decision, and now all I can do is try to help them work it out in the best way possible.
(See, this is why people need to listen to me: the number of things I could say "I told you so" about in this situation are M_A_N_Y; but I resist. Except for here... here I can tell you that they are wrong, and not thinking clearly, and rushing rushing rushing into a very important decision without thinking through the consequences again!!!)

It's a beautiful fall day outside, but my house is about 15-12 degrees cooler. So I'm cold, and everybody who walks by says "Oh, but it's soo nice outside!" This means nothing to me, because I am inside, and here, it is cold.
(You might as well say, "Oh, but in Kentucky, it's sooo nice!" I am not in Kentucky, therefore it doesn't matter to me.)

That's about all the two-sided conversations I am up to having with myself this morning... I'll try and come up with something interesting for the next time we talk.

Have a great (faux) Monday, everybody!

Saturday, October 07, 2006

Return to the hunt...





PSHunt


Grab the Scavenger Hunt code.

Photo Theme. Join the blogroll. Visit participants.



I'm back! And just in time for a theme I can really get on board with: Sleeping.

Sleeping pictures (according to my Picasa 2) are the second most popular theme of pictures in my house. (#1 being All Dressed Up, which includes over 60 pictures of people in hats...Which is just... Strange.) I had upwards of 125 pictures to choose from (some of which I'm saving for the future dreaming theme I saw on the list).

Here's what I wound up with:

First off, a two-fer: SisterCh and my dad, Christmas morning 1987. This was back when she was still cute and snuggly, and actually liked us. (Today, not so much.)


Then there's my BigBrother (also 1987) and his boy, Punkin (earlier this year).
How awesome is it that my 6-year-old nephew is less of a geek than his 11 year old father was? SisterJ saw that picture of Punkin and said he was "pimpin!"; his father, on the other hand, is definitely not.

























And I'll finish up with my mom's absolute favorite picture of me, sound asleep in busy Logan Airport, July 1979. She says that I slept through most of the very long flight to California, while my brother (then 3 1/2) got airsick almost before the plane was in the air. It's a really good shot, though... and just precious.



So, that's what I've got for you today: I'm off to make the rounds right now (hooray!), and am glad to be back & up for playing.

Wednesday, October 04, 2006

A meme kind of day

Courtesy of Diner Girl


TEN Random Things You May Not Know About Me:
1. My bookshelf is organized by author, genre and color (in that order).
2. I eat Snickers bars by taking a bite, then sucking all the chocolate off, then sucking on the caramel and peanuts.
3. I can move my pinky toe independently of the rest of my toes.
4. I hate mayonaise. And tunafish. And together? They are probably the most disgusting thing ever.
5. I believe in things a grown-up probaly shouldn't still believe in.
6. When there's a funeral at the church across the street, I sometimes cry just watching them all file in behind the casket.
7. When I was well, and a dancer, I could do splits easily and comfortably make my feet rest up behind my head.
8. I love to make lists, but don't always follow them.
9. My brother and I each have a chicken pox scar in the same exact place: over the arch of our left eyebrow.
10. I think poetry needs to be read aloud or else it's not interesting.

NINE Places I've Visited:
1. Kissimee, Florida (Where I saw it rain on one side of the street, with the sun shining on the other. Also where I saw my first rainbow.)
2. Point Sebago, Maine (I LOVED it... even though we were in a trailer)
3. NYC (In general, too loud for me, but I'd love to go and see a show, stay at the Plaza with Eloise, etc.)
4. Washington D.C. (History Day, 1993)
5. Wareham/Cape Cod, MA
6. North Conway, NH
7. Disney World
8. Newport, RI
9. San Diego, CA (although I was 2 months old, so I don't remember it)

EIGHT Ways to Win My Heart:
1. Love me for me: see past the broken down body enough to care about me as a person.
2. Be understanding.
3. Don't have pets. I like animals, but am allergic.
4. Love & be able to interact well with kids. (Not that goofy, totally fake crap that so many grown-ups do: really enjoy their company.)
5. Allow me to have the remote control more often.
6. Understand that reading is not a waste of time, but rather a necessity.
7. Stick up for me.
8. Get that talking to my mom or sisters about you [i] is [/i] going to happen. Deal.



SEVEN Things I Want to Do Before I Die:
1. Get Better.
2. Get Better.
3. Get Better.
4. Get Better.
5. Get Better.
6. Get Better.
7. Get Better. (Yes, there are other things I'd like to do, but if I could only get one, that'd be it.)

SIX Things I'm Afraid Of:
1. Outliving the people I love.
2. Never getting better.
3. Never finding my place in the world.
4. Losing my debit card.
5. That feeling when you know something is wrong but you can't figure out what it is.
6. That things will go from bad to worse.

FIVE Things I Don't Like:
1. Not being able to be nicer to myself.
2. Insensitive, rude, or just plain careless people.
3. Smells.
4. People who think reading romance novels equals being dumb. (Hey, I've read Tolstoy... I just didn't enjoy him as much as I enjoy Nora Roberts!)
5. When the UPS guy doesn't ring the bell. He was HERE, he stuck his little sticky note on the door that said we weren't home. I was HERE, so I know he never rang the bell. Wouldn't it be just as easy to give me my package as to stick the note up?

FOUR Ways to Turn Me Off:
1. Wearing a scent - again with the allergies.
2. Being rude to service people, strangers, or (God Forbid) your family.
3. Acting like you're right even when you know you're not. Just admit it already.
4. Suggesting that "everybody gets fatigued," or telling me about some "MIRACLE cure" you read about on the internet: I know my disease backwards, forwards and inside out. I stay current on research, treatments, new developments. I have tried everything my doctors can think of...if there were a cure, I would know about it. Thanks for thinking of me, but really, don't you think I do everything I can to not be like this? Perhaps you adding more pressure - kindly or otherwise - really isn't the greatest idea.


THREE Things I Do Every Day:
1. Read
2. Take my meds
3. Talk to someone I love

TWO Things that Make Me Happy:
1. My niece and nephews
2. Books

ONE Thing On My Mind Right Now:
1. I really need to get this site all spiffy. I need to get a new template, write and edit a new blogroll (as the old one still hasn't shown up completely), figure out what the heck blogger beta is. I don't know when I'll get any of this done, but it's on my mind.

Sunday, October 01, 2006

A Perfect Post

(ETA: I do not know why my blog is yelling at you: I haven't screwed with the template at ALL. But I must.... hopefully, till I do, you can get past the shouting and read without getting a headache.)



Although I missed a bit of the month, there were still a ton of standouts up for this month's Perfect Post award (Via
Lucinda and MommaK).


The runners up included:


Paper Napkin and her son, for an amusing game.


Dooce for making me rethink the definition of a picky eater.

And
Drunkbunny's
slightly older (ok, a year older & totally not eligble except that I just found it) post about Gay Marriage. That made me laugh, big time.



But I've decided to award September's Perfect Post to
A Perfect Post
WALL PAPER OF MY MIND, who's a recent addition to my blogs-I-must-read category. There's examples of why I like her so muchhere and here, but it was this post that I think is just perfect.
Because it reflects so much of what I feel is really, really good about the blogging community.

She writes:


"I came to love the comments on blogs. I am still realizing with each new blog I stumble-link to, in such a staggering ocean breadth of authors, that so many of them thrive on the feedback and the interaction it produces. Community is trans-morphing at a rapid pace for mothers. I not only read, but have met and become friends with the women I admire on-line. It has no precedent. "


I'm not, technically, a mommyblogger. Because I don't have any kids of my own. But I guess I am an Auntie Blogger, since the two beautiful souls that I am helping to raise are often fodder for my blog. And I love the amount of information and support and caring and fun that mommybloggers contribute to this strange new world we're all building here. So, I agree that it's something for them to be proud of, to claim.

So, WallPaper, you get to claim this prize, for standing up for Mommy Bloggers.